Neutral - I feel the same as always

No I feel worse in cold weather

I feel better but pain symptom is worse

I totally identify with your being "a different person from day to night". I am 75% better at night and that
only makes my sleep-shifted hours worse (go to bed ungodly late early AM). It seems like the world
is totally opposite. Just when everyone is getting tired and going to bed it is then that I can do anything.
Although, have noticed at around 8pm am getting tired and then it passes. Thinking it may be akin to
most people's "afternoon slump". Also when it is COOL I have way more energy and can think better as well.

I cannot loose weight to save my life. I control portions/ eat lean and low fat and low sugar for the
most part. I mean before I got THIS sick I could always loose when I tried. Now it is impossible.
I try to move a little in water when I am able (infrequently), or walk a bit, but can't ever do enough to
have it burn calories. I posted above about EXTREME heat intolerance. I also have hypoglycemia
and so have to eat very frequently so as to avoid fainting. That makes the problem even worse. ARGH!!!

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I'm exactly like that too! I have to eat every 2 1/2 hours or else i'll be flat on my face with my heart rate a mess. I eat a gluten free, low sugar, good fats diet and with limited grains, and still, the weight stays. its so frustratttinggg. I can't exercise now because its too hot and my POTS has been acting up, so stuck in that limbo @.@

And I agree with the day to night thing..I feel muuuchh better at night, but i'm forced to wake up early in the morning now and i feel much worse. I felt the best when i woke up at 2pm, and went to bed at around 6 or 7am, but definitely can't do that schedule anymore. So i'll just sit under the fan next to the air vent, hahaha.

Fredricktoo,
Glad you appreciated my post and good to know I am not alone!! It is just so extreme, no one can usually
relate. I carry a fan in my purse and also WATER and also a portable fan with a spray mister ON TOP of all the rest!!!
I have SEVEN fans in a 2 bdrm apt along with one portable AC in my bedroom. Can anyone believe this level of
need?? I even carry a fan in my car in case I am to go out where I need it and a week ago went everywhere
with ALL of those things (purse fan, water, spray mister and portable fan!!!!!) Even then I was dying and got SO sick that I have not been able to leave the house all week!!!! Stuck in bedroom with the portable AC feeling just at my worse because it is about 90 outside and I need it to be 73 or lower. I can quickly feel like I am going to pass out and rather it not happen. Severe weakness and nausea as well as feeling of being "poisoned".
Well, I guess this is even more description than I had before!! Got carried away!!! PLEASE STAY COOL!!!!
I FEEL FOR YOU in Florida!!! Can you get a battery type generator/AC for emergencies? Do they make them?

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Thanks for the suggestions Raindrop! I live in a condo with an airconditioner on the roof. I know it's up there because you can see the little dot on the roof on Google earth. It's my air conditioner but I can't put anything on the roof per condo rules. One of the biggest businesses in Fl is air conditioner maintenance. They come fairly quickly and I've only need them once in three years. My wife and her friends do all of the outdoor chores and shopping. I'm bed bound with a few bulging discs and a compressed vertebrae. I've also had some minor strokes back in the 90's post anesthesia. I'll do anything necessary to keep from overheating. The feeling of sickness, weakness, and mind numbingness that I experience in the heat are as I mentioned not believed by healthy people. You're the first person in 13 years I've met that can relate to how bad I feel. Do exactly what you must to feel well and don't worry about what other say or think. It's not worth it. We're shunned by the healthy and not understood by the medical community. It's such a relief to know that I'm not the only one like this. Not that I would ever wish this on my worst enemy and I wish that there was a cure, not just treatment but a cure for this hellish disorder.

I cannot loose weight to save my life. I control portions/ eat lean and low fat and low sugar for the
most part. I mean before I got THIS sick I could always loose when I tried. Now it is impossible.
I try to move a little in water when I am able (infrequently), or walk a bit, but can't ever do enough to
have it burn calories. I posted above about EXTREME heat intolerance. I also have hypoglycemia
and so have to eat very frequently so as to avoid fainting. That makes the problem even worse. ARGH!!!

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There is increasing evidence that it is carbohydrate that makes people overweight, not dietary fat. When I acted on this and threw 'low-fat' out of the window (metaphorically-speaking, of course!) and reduced grains and sugar to a minimum as well as taking gut-healing and muscle-building supplements, the weight fell off. Nothing else has ever worked for me. It also stabilises blood sugar.

MeSci some of us can do some sort of low impact aerobic exercise with ME. I can power walk for an hour 2-3wk when it's cooler weather but only in the evenings, during the day I have to lie down every 2hrs and get adequate rest between cooking, cleaning etc. I'm housebound during the day unless I have someone drives me to go shopping, I can not walk very far or stand upright for over 2hrs MAX. When the evening comes around my energy levels go up, it's like I'm 2 completely different people from day to night. Only one sister understands this but no one else who's not sick can- not even my doctor. I don't know if I have OI, POTS or NMH but it sure feels as though I do at a mild level and I'm not sure whether people who have this feel better after 6pm.

For the most part I don't get PENE the day after power walking unless my immune system is acting up ie; viral. So I am careful. I don't power walk every week though, it depends on whether I have appt's to go to etc. My energy expansion is planned in advance and tightly managed, I can not be spontaneous. Some of us can do some sort of low impact aerobic exercise such a brisk walking. I would never go beyond that even if I felt "better" because it's contradictory and long term harmful.

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I almost never get PENE/PEM the day after over-exertion. I usually feel no different. It does not hit until at least 2 days after the exertion.

The reason why many of us find that our energy levels go up in the evening could be abnormal diurnal cortisol patterns.

In healthy people, cortisol is high on waking and low in the evening. Some research has found the opposite in ME/CFS, for example this paper (maybe try to ignore the fact that the journal is called Psychosomatic Medicine! ).

MeSci, I've swung betweeen BMIs of 19 and 30 too, and I'm 5'1". I suppose we're both bonsais.
I've lost about 30 lbs over the last 3 years.
Weight started piling on when I had to start taking an antidepressant.

I do a sort of 5/2 diet, (as it is now being called). Just having a few days here and there where I eat very, very little.
It works for me, but would not be any good for folk who need to eat regularly.

I seem to get a surge of being able to do things around 4pm.
I don't know if it's a circadian thing or if it's just a slight panic that Michael will be home in a couple of hours and nothing has been done to tidy up, giving me a tiny adrenalin boost.

There is increasing evidence that it is carbohydrate that makes people overweight, not dietary fat. When I acted on this and threw 'low-fat' out of the window (metaphorically-speaking, of course!) and reduced grains and sugar to a minimum as well as taking gut-healing and muscle-building supplements, the weight fell off. Nothing else has ever worked for me. It also stabilises blood sugar.

I almost never get PENE/PEM the day after over-exertion. I usually feel no different. It does not hit until at least 2 days after the exertion.

The reason why many of us find that our energy levels go up in the evening could be abnormal diurnal cortisol patterns.

In healthy people, cortisol is high on waking and low in the evening. Some research has found the opposite in ME/CFS, for example this paper (maybe try to ignore the fact that the journal is called Psychosomatic Medicine! ).

Interesting. I'm also looking at this and it describes a lot of symptoms I feel during the morning and early afternoon hours. The light headedness, muscle weakness, dizziness, jumpiness/jittery, flu like symptoms all over body aches, higher heart rate- this describes me. Wow, I never attributed it low cortisol. I don't have this in the evenings.. http://www.stopthethyroidmadness.com/adrenal-info/symptoms-low-cortisol/

Are there any ways to increase cortisol levels in the morning with natural supplements?

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There may be a thread on this, but all I can think of is melatonin according to this study, although it was only in 'aged women' - not a term I appreciate as I fall into the age group that they define in this way!

Are there any ways to increase cortisol levels in the morning with natural supplements?

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One thing I've found is bright light first thing increases cortisol.
...Ideally with appropriate measures taken in the evening too, to avoid blue light. Exposure to blue light can phase shift, or shorten the melatonin cycle.

I've been taking things to lower my coritsol because its high no matter what time of day. My acupuncturist(who is also a medically licensed doctor and did my blood tests) said my cortisol was off the charts..it went off the measuring system graph!

I fit the profile of the type of pt described with cortisol levels reversed. I am WAY high at 2AM and thus why
I cannot get to sleep. BUT WHY????? I am very low in the morning. I cannot do "light therapy" bc I cannot
tollerate (at ALL!) any bright light whatsoever. Anyone have any ideas for shifting the cortisol or sleep wake cycles?
ALSO.....does anyone have any experience with CORTITROL by Pharmanex??? Supposed to "ballance cortisol levels". Someone gave this to me to try.

I fit the profile of the type of pt described with cortisol levels reversed. I am WAY high at 2AM and thus why
I cannot get to sleep. BUT WHY????? I am very low in the morning. I cannot do "light therapy" bc I cannot
tollerate (at ALL!) any bright light whatsoever. Anyone have any ideas for shifting the cortisol or sleep wake cycles?
ALSO.....does anyone have any experience with CORTITROL by Pharmanex??? Supposed to "ballance cortisol levels". Someone gave this to me to try.

Yes, I do take at night but doesn't seem to do anything. I take 1 to 2 mg about 1/2 to 1 hr before I try to sleep. Seems that like most other things, the longer you take, the less it works. If I go up to 3 mg then I get too dizzy.

Blue-blocking sunglasses can be used to help shift the sleep-wake cycle. If you do a search, you will find more about it on another thread(s).

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I did a search but could not find. Looked up on google. Has anyone you know used them who has severe
sleep disorders and sleep reversal? They look expensive so wanted to know the probability of them working.

I do not know anyone personally who is using them and an not sure of the severity of the sleep problems of the members here who are using them. Maybe someone who has used them for a severe disorder will let you know.

I do not know anyone personally who is using them and an not sure of the severity of the sleep problems of the members here who are using them. Maybe someone who has used them for a severe disorder will let you know.